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Secondary breast cancer

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Re: Secondary breast cancer

I have just done my first cycle of palbociclib. I haven’t had any side effects and my breast lump has gone down a bit. I hope it’s working on my bones. It’s worrying to heat about all the side effects. I hope they get better
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Re: Secondary breast cancer

What are the side effects of palbo and how long will you be on it?  It certainly sounds a struggle.

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Re: Secondary breast cancer

Scary indeed, Camilla, but there are a lot of us here and together we can chase the bogeyman!

I started on 125 mcgs of Palbociclib but ended up in hospital. There is a name for it - pleural infusion I think. My Onco reduced it to 100 mcgs but my neutrophils crashed and my bone marrow was rubbish so I had a two week rest instead of one week. ( Palbo is three weeks on and one off) Now I'm on 75mcgs which I just about manage. I'm very tired on week three, so make the drugs an excuse for lying around and doing no housework! 😇. My neutrophils don't recover well as I'm 71. Going in for bloods tomorrow after one week. It was up to two weeks, but it's obviously a bit crappy so my Onco phoned to get me in. I'm very well looked after,  so just go with the flow. I've talked to others who have been taken off it for a 'rest'. As far as I know, in the 20 of us taking it on trial I'm the oldest and on the lowest dose - but it's working with the Letrozole to shrink the mets. X

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Re: Secondary breast cancer

Thank you Anniej. Really good news for you although iIts all so t has been hard.

 

Are you still continuing with that same drug even though it's too strong for you?

 

I have not had the breast op so still have my primary site although 7 rounds of chemo have worked well on the breast tumour.

 

I will be told on Fri what my ongoing treatment might be.

 

It's all so scary...

 

 

 

 

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Re: Secondary breast cancer

Hi Camilla, sorry I have just picked this up. I was diagnosed with four lung mets, two in each, after a second ct scan in October last year. This was after chemo, and twenty sessions of rads. I still had five to go so I was a bit gob smacked! I was already taking Letrozole before I started my rads. After my diagnosis I was placed on Palbociclib as part of a trial. After three cycles ( which I have struggled with) all my mets have shrunk. I had a two week holiday in hospital in November with what looked like a very severe lung infection, but it was the drug - just too powerful for me. The clouding in that lung is gradually going, but I still have a little dry cough. I feel well in myself, although I do get fatigued at the end of the three week cycle. I have just had my first scan and mammogram which shows no spread and no return in primary site. My Onco is absolutely thrilled for me, as am I!  Wishing you the very best. X

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Re: Secondary breast cancer

Forgot to say my cancer is HER 2 + not hormone responsive.

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Re: Secondary breast cancer

Dragoncarine thanks for your reply. The fact that your 2 lung  nodules have shrunk down to 2mm is amazing, esp since you're not on chemo. What treatment are you having that's had such success?

 

I am feeling very despondent so good to have some good news. Will be interesting to hear the results of your latest scan.

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Re: Secondary breast cancer

Thank you Nicky for your reply. I have an appointment with a BCN on Thursday so I hope to get some reassurance from her. It was picked up on a repeat CT checking lung nodules - which turned out to be benign - but a lesion on my sternum was thickening as a result of the chemo, suggesting it had been there at the outset. Because it was responding there was no change to my treatment at the time. 

 

Fingers crossed for your scan dragoncarine, and good luck for Friday Camilla. Xx

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Re: Secondary breast cancer

Hi dragoncarine, you must’ve been thrilled with that response, can I ask did you make any lifestyle changes after your diagnosis? I remember you recommending a book about mindfulness, which I then bought, and know from reading on here that you’ve attended Penny Brohn courses, which I have too. Would be very interested to know about any changes you’ve made. Hope this scan has as good a result for you. Thank you, Kate x

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Re: Secondary breast cancer

Camilla

Rest assured that may not be the case. Try to find a local group to meet up with - it has been fantastically ressuring for me to meet ladies who are several years down the line with this diagnosis.

I have mets to lungs, bones, lymph & skin and am not currently on any chemo (much to my initial surprise & confusion when diagnosed last year). It will depend on whether your cancer is hormone positive or not which treatment you start on. Many of the ladies on here have had several different treatments as there seems to be lots of different things to try and no one seems to know if they'll work for each individual except by trying.

With hormone treatment (Tamoxifen & Goserelin) my lungs have gone from: one full of fluid + numerous nodules up to 9mm on first scan (May 2107) to very little fluid and 2 nodules, both of which are under 2mm on last scan (Feb 2018). Am due another scan on wednesday so will be interesting to see the difference.

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Re: Secondary breast cancer

Sandy, I have just been diagnosed with secondary to the lungs. Appt on Fri to discuss treatment going forward. What is your treatment plan? The thought of poss being attached to the chemo unit for the rest of my life is very daunting and miserable. 

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Re: Secondary breast cancer

Hi butterfly

As you have said, the shock of the secondary diagnosis has just hit you now that your initial surgery and radiotherapy are completed. It does take a while to adjust to this new world so give yourself time. It sounds like you are on the right treatment for your type of BC and that it will be continuing until at least a scan of some sort. It is my understanding that H and P are continued until progression is seen, as it is the ladies on Herceptin alone (before the P was added to the mix)  remain on that until progression is shown. It would be unusual to stop it if it appears to be working., after all once you have secondaries you tend to be on one type of treatment (be it for HER2+ and/or hormone + BC) until progression it seen. There is a thread regarding Pertuzamab/Perjeta which I’ll try to find and ‘bump’ up the page. I can’t remember if it’s in the ‘Treatments and Medical Issues’ part o& the secondaries forum or in this ‘Living with SBC’ part. You could ask on there as well to see if any ladies on this combo have been told to stop. Btw I was on this combo a couple of years back but it was found that as I was only very weakly HER2+ I wasn’t getting any benefit from it so I stopped it when progression was seen. The next treatment, at the moment, after this combo is Kadcyla - a chemo regime.

Camilla, hi, although i don’t have lung mets there are other ladies on here, including FF, who do. If secondaries are diagnosed at the same time or, in your case prior to surgery, there seems to be a view that removal of the primary should be delayed or not done at all. In the case of ‘butterfly’ who has just posted I can only assume her secondaries were found after surgery and in fact if there are no body scans done at the time of primary diagnosis there’s no real sign that it has spread already . It’s not unusual for secondaries to show up at the same or similar time as a primary diagnosis it just happens in fewer ladies. If surgery is off the cards for now any treatment you will be having for your secondaries will still be attacking your primary as well,  as the treatments are systemic ie not focussed on one area as in the case of radiotherapy. Once a period of stability is shown  you oncologist may feel that surgery is an option but to be honest it tends to be up to the individual hospital or MDT rather than a national decision. My secondary diagnosis came after a local recurrence was seen on a routine mammogram, a pre-mastectomy CT scan then picked up my bone mets. The mastectomy was cancelled and the priority was to treat my mets. I didn’t have the mastectomy but equally there’s no recurrence or sign of it - and that was 10 years ago.

Nicky x

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Re: Secondary breast cancer

Hi ladies

I was diagnosed with a secondary on my sternum 3 months after primary, back in October. At the time I was halfway through 8 rounds of chemo before surgery, had had a blood clot so had PICC line removed and was starting 3m of Tinzaparin. Unsurprisingly the implication of the secondary didn’t even register at the time. 

 

Am now post mx and SNB, with 15 shots of radiotherapy which included the sternum, finished yesterday, and the horror of diagnosis is now just starting to sink in. 

 

I am HEP2+ so am having Herceptin and Pertuzumab 3 weekly but the doctors have indicated that they might stop this in October, after 12m, if my PET scan is then clear. This is causing me huge anxiety as I feel that if the scan is clear it means the treatment is working and keeping the cancer under control. And therefore don’t understand why it should be stopped? Equally if it’s not clear, then something else needs to offered as it clearly didn’t do its job. 

 

Has anyone else continued with Herceptin and Pertuzumab beyond the 12 months? Thanks xx

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Re: Secondary breast cancer

Camilla, I don't have HER2, but I do have lung mets and lymph nodes in chest. I had my primary in fall of 1995 and secondaries fall of 2005. I have had numerous chemos and now some hormonal. I can't promise you 12 1/2 years and no one can. Everyone's cancer is different and responds differently. I just want to give you HOPE. FF

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Re: Secondary breast cancer

I have been diagnosed today with secondary breast cancer in the lung. Next Friday I have a meeting with the breast cancer team to discuss future treatment. I have just finished 7 chemo cycles for an HER2 tumour in the breast and was expecting a lumpectomy, but with the lung diagnosis the breast op seems to have been put on the back burner.

 

Is anyone in a similar position and going through treatment for lung metastases? If so what treatment are you having and what has been the outcome so far?

 

I would be so grateful for any imput. Thank you.

 

 

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Re: Secondary breast cancer

Hi sandy
Waiting for scan results is such an anxious time isn't it? I had a ct scan yday results in 2 weeks - trying to keep myself busy until them. Making the most of the sun too just back from bike ride now basking in garden! Are you having a lot of symptoms from the fluid - perhaps they would consider a chest drain until chemo kicks in if you are struggling ??
Sarah x
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Re: Secondary breast cancer

I’m due another ct scan on Monday & I can’t help feeling very nervous about it. The last scan was January 18 & that’s the one they reported nothing sinister. Struggling with fluid in plural but they want me to continue with chemo (tablet form) in the hope this will slow the fluid down until we have the ct results. Then they may re-evaluate the fluid problem. Small mercy’s the sun is out today & we sitting in the garden having a small beer.
Cheers Sandy x
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Re: Secondary breast cancer

How are you getting on? Hope you’re okay? It’s all very difficult and shocking x
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Re: Secondary breast cancer

Thank you so much for your support xx
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Re: Secondary breast cancer

Oh dear that is disappointing and alarming. Cancer seems to be see unpredictable. I very much hope your next treatment works well x
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Re: Secondary breast cancer

Hello sandy

Welcome. .nothing in the world of hospitals seems to move fast does it ? I feel a bit let down too as November 2017 my scan showed stable bones only. Had scan Feb 2018 ..waited 6 weeks for results and to see oncologist to be told now progression to lungs and liver ...I have now changed treatment .
Please keep in touch as we all can support u.

Hugs xxx
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Re: Secondary breast cancer

I feel for you very deeply. So disappointing after only 11 months. I was diagnosed stage 4 from the start and have three small areas on the bone. I am very low today which is unfamiliar territory for me. You seem to have been very unlucky only to have had 11 months. Some people are clear for years and years. I am very recently diagnosed but there are women on this forum who have been coping with this for years and they have generously offered advice and support to me and I’m sure they will to you too
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Re: Secondary breast cancer

I feel for you & my case is simpler. 11 months out of treatment for BC & I’ve got secondary to the lungs. The sad thing is it’s takeb them 3 months to finally diagnose & I feel very let down. Just about to start the treatment this week. Hopefully we can do our best to not let this cancer win this fight! All the very best to you xx
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Re: Secondary breast cancer

Hi LCM

It is very scary to have a secondary BC diagnosis and obviously totally unexpected only a few months after having had primary BC. There will be other treatments options available to you, it could be that your BC doesn’t respond to the type of hormone treatment you were on. We are here to help and share our experiences of various treatments and general questions that will come up. As I’ve said to Anne30 on the main ‘Bone Mets ‘ thread, try not to Google, it will scare you! Stick to websites like this where they provide support and information sheets rather than quoting statistics and the members are all ladies going through the same things and can therefore support you once you know your treatment plan.

Nicky x

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Re: Secondary breast cancer

It’s such a shock. There are many ladies who cope with bone Mets and there seem to be many treatments. Join the bone Mets please join in thread. There are loads of posts there and I read all of them curled up under a rug. Very helpful. Be kind to yoursel
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Secondary breast cancer

I have just unbelievably been diagnosed wit has secondary breast cancer in my bones 10 months after breast cancer diagnosis.l gave been taking letrozole for 8 months so how can this happen l am scaredelighted and confused